Luka the Lion Foundation honors child’s spirit

Throughout Luka Fisher’s tragically short but courageous life – it earned him the nickname Luka the Lion – his parents’ daily mantra was: “If he can do it, then so can we.”

Now Zach and Julia Fisher of Durham are paying tribute to their late son’s indomitable spirit – paying it forward, actually – by creating a foundation to support children born with rare diseases, as well as their families.

“Even though he has passed, his spirit is living on,” said Julia Fisher, 33.

Luka was not quite 21 months old when he died Dec. 1. A fundraising effort mounted for the Luka the Lion Foundation two days after his death already had raised $12,845 through Sunday afternoon.

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Luka was fighting for his life practically from the day he was born, with a primary immunodeficiency disease that weakened his immune system, making him more susceptible to infections and robbing him of any semblance of a normal childhood. Luka’s condition was so rare that it doesn’t have a name and indeed may have been unique to him.

“He was a very unique person, not just medically but his personality,” Julia Fisher said. “He was just always smiling and happy. Literally, the phrase everyone would say is, ‘You would never know he was sick’ ... If you just looked at his disposition, you would think he was a very happy 1-year-old.”

Dr. Philip Roehrs, a pediatric hematologist-oncologist who was Luka’s physician at UNC Children’s Hospital, is equally positive about Luka.

“I think Luka the Lion was a natural label to give this strong child who was fighting this horrible disease,” Roehrs said. “Despite all he went through, he was always happy, he was always interactive, he was very caring. He was just a wise old soul.”

Luka’s experiences were dictated by his illness. Mostly, he was confined to his parent’s home in Durham and the hospital. He had to wear a mask when he was in public and couldn’t be around anyone with a runny nose or cough. He couldn’t take a typical bath because he had a central line.

But his spirit survived, even when he received a shot.

“He would clap and say, ‘I did it,’” Julia Fisher said. “He had no complaint in the world.”

After Luka was born, his mother didn’t return to work so that she could care for him full-time. She had been associate director of GEAR UP North Carolina, a statewide college access program run by the University of North Carolina System.

“He basically needed growth factor for his bone marrow every other day,” Roehrs said. “He needed IV antibiotics daily. He ended up with a fungal infection so he needed anti-fungals. He needed frequent replacement of immunoglobulins ... And so, basically, he was kind of like a bubble boy, almost.”

The Fishers have high praise for the care Luka received at UNC Children’s Hospital.

“In his last days, it felt like almost every nurse and doctor at the hospital came to pay their respects,” Julia Fisher said. “I think it was a testament to him and to them.”

In addition, she noted, Luka and Roehrs forged a special bond.

“It was beautiful to watch,” she said. “There would be times in the clinic where they would hold hands and walk back together to the exam room.”

Zach Fisher said the family’s extended support network included his brother Isaac, who works for a company that does on-site contract work for sports cable network ESPN. Luminaries such as Roy Williams, the coach of the UNC men’s basketball team, and soccer player Julie Foudy posed for pictures with specially made scarves bearing a #LUKATHELION insignia after Isaac told them Luka’s story.

When “you’re in a sea of doctors coming in and out with consults and bad news, something as simple as Roy Williams smiling and holding up a scarf can just make you feel better,” Julia Fisher said.

Luka’s death wasn’t the first time that the Fishers – who also have a healthy and energetic 4-year-old daughter, Maia – have been forced to cope with the heartache that comes from losing a child.

“Our first child, his name was Maks, he passed away in utero at almost 36 weeks,” Julia said. “To this day, there is no explanation why it happened.”

But Julia suspects Maks’ death was linked to Luka’s disease.

“We don’t have proof that it’s not connected,” she said. “We don’t have proof that it is connected.”

Losing a second son is both “easier and harder at the same time,” Julia said. “Harder in that of course you never want to bury one kid, let alone two. But easier in that there is some comfort there. They are together wherever they are. They are literally in he same cemetery plot.”

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